Slides: Havasupai People vs Arizona State University
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Donna SpruijtMetz, PhD MFA Director, USC mHealth Collaboratory Center for Economic and Social Research Associate Professor Preven=ve Medicine and Psychology Director, Responsible Conduct in Research, USC Keck School of Medicine [email protected] USC CTSI Ethics Forum September 10 2014 The Havasupai Tribe versus Arizona State University Gene7cs, Consent, and Communi7es
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In 1989, the Havasupai Tribe asked an anthropologist at Arizona State University for help in figuring out whether genetics might be contributing to its high rate of diabetes mellitus. The anthropologist recruited a geneticist (who was also interested in schizophrenia) to lead the study. The rest of the story is disputed. Was only diabetes research mentioned when members of the tribe allowed ASU investigators to collect blood samples or did the Havasupai understand that other questions could be studied when they provided consent for research on “the causes of behavioral/medical disorders”? The researchers determined that the genetic link to diabetes found in another tribe did not exist among the Havasupai, but other ASU researchers who used the samples published papers about alcoholism, mental illness and the tribe’s migration from Asia (thus contradicting the tribe’s core beliefs about its origins). After seven years of litigation, the suit brought by the tribe in 2003 was finally settled with ASU apologizing, paying $700,000 to 41 of the Havasupai, returning the blood specimens to the tribe, and agreeing to prevent any further research based on information derived from the materials. This forum will explore such issues as: What was the meaning of the consent that the Havasupai provided? What should subjects be told about future research with anonymized samples? What can we tell them? What are the interests of the tribe (distinct from its members’ interests) and how can and should they be protected? What are the implications of the ASU-Havasupai case for physician-investigators conducting community-based research in a diverse urban setting like Los Angeles?
Transcript of Slides: Havasupai People vs Arizona State University
Donna Spruijt-‐Metz, PhD MFA
Director, USC mHealth Collaboratory
Center for Economic and Social Research Associate Professor Preven=ve Medicine and Psychology
Director, Responsible Conduct in Research, USC Keck School of Medicine [email protected]
USC CTSI Ethics Forum September 10 2014
The Havasupai Tribe versus Arizona State University
Gene7cs, Consent, and Communi7es
The Havasupai people (people of the blue-‐green waters) have lived in the Grand Canyon
for at least the past 800 years
• ~ 650 people • In 1989, members approached ASU to learn why the incidence of
diabetes within their community was increasing. • Therese Markow, a genePcist at ASU, took on the study. • ~ 100 tribal members signed a broad consent document to “study
the causes of behavioral/medical disorders” • Most of them had not completed high school, and, for many,
English was a second language • All believed that they were donaPng blood solely for the purpose of
looking for a link to diabetes to improve the health in their community
• The genePc link to diabetes ASU was looking for was not found • Research conPnued into medical disorders without seeking
addiPonal consent • Other ASU researchers also uPlized the Havasupai samples for their
work and published papers about inbreeding, alcoholism, and the origin and migraPon of the tribe from Asia.
Havasupai Indian Tribe Journey
• hXp://www.nyPmes.com/video/2010/04/21/us/1247467672743/blood-‐journey.html
What does this teach us? • What was the meaning of the consent that the Havasupai provided? • What’s the harm—when genePc data are derived from samples that
have been voluntarily provided to researchers for another purpose? • What are the interests of the tribe (disPnct from its members’
interests) – how can we solicit feedback so that we can know them? – how can and should they be protected?
• What kinds of harms tend to be under-‐emphasized in our current IRB review?
• What should subjects be told about future research with anonymized samples?
• What are the implicaPons of the ASU-‐Havasupai case for scienPsts conducPng community-‐based research in a diverse urban secng like Los Angeles?
hXp://www.naPveresearchnetwork.org/links.htm
hXp://ncaiprc.org/
